The New York Times recently reported that the radiology department at the SUNY hospital in Brooklyn admitted that it had frequently subjected infants to full-body X-rays by mistake.  The doctor that discovered the error was aghast:

Dr. Sclafani noticed that a newborn had been irradiated from head to toe — with no gonadal shielding — even though only a simple chest X-ray had been ordered.

“I was mortified,” he wrote on July 27, 2007. Worse, technologists had given the same baby about 10 of these whole-body X-rays. “Full, unabashed, total irradiation of a neonate,” Dr. Sclafani said, adding, “This poor, defenseless baby.”

Why am I not surprised?  Given the experience I’ve had with invasive testing procedures ordered by the hospital during my son’s bone marrow transplant, I suspect it happens all the time.   Although this involved mistakes by the radiation lab in overdosing infants, the very fact someone had ordered ten X-rays on the infant shows the disregard for patient welfare that, by its very nature, permeates hospital bureaucracy.

By the time my son, at age fifteen, suffered a relapse in the leukemia for which he had received a bone marrow transplant eight years earlier, his body had already been irradiated so many more times than normal that it’s surprising he didn’t glow in the dark.  He’d had total body irradiation in conjunction with the transplant, a CT scan prior to the transplant, and several CT scans and X-rays in the years in between.   Total body irradiation is, of course, the mother of all irradiation doses, short of dipping into the cooling water of a nuclear reactor.  Total body CT scans are next.  X-rays are relatively benign by comparison.

With his second transplant, there would/could be no TBI (total body irradiation) to kill his bone marrow, including hopefully any remaining leukemia cells that might be lurking (since he relapsed with a genetically-identical leukemia, i.e., a daughter cell of the original cancer had survived lo those eight years, our hopes so far as the efficacy of TBI at killing cancer cells weren’t realized).  TBI can only be done once, so all the killing would come with chemo. 

Chemo works like radiation to cure cancer, by differentially killing fast-growing cells (i.e., cancer cells, white blood cells, skin and hair cells) at a higher rate than it kills other cells.  The trick is for the differential to be high enough that non-cancerous cells won’t be so detrimentally impacted that killing the cancer also kills the patient.   But the differential for my son was apparently very low during the second transplant, and the chemo nearly killed him. 

That’s where the invasive testing came in.  When his kidneys failed, the excess fluid had all of his organs sputtering.  He had fluid on his lungs, so of course they did a lung X-ray practically every day.  They took him down for a full-body CT scan to try to determine why his liver was puking out.  It was one test after another.  They wanted to biopsy his kidneys, but I refused.  It was obvious to me why his kidneys failed him.  Chemotherapy is especially hard on the kidneys, and he’d had an extensive amount of it.  If he somehow survived the cancer treatments, I was afraid the testing regime would do him in.  I resolved that if he recovered, we were through with irradiative medicine. 

He somehow managed to survive and began gaining strength a little less than a year ago.  But almost as soon as his bone marrow and body started functioning more or less properly, he developed a host of symptoms that I knew at the time indicated graft-versus-host-disease (GVHD):  Difficulty swallowing; dry eyes and mouth; liver function tests deteriorating; kidney functions (after having recovered from failure) deteriorating again, etc.  GVHD is a complication unique to bone marrow transplants where the new marrow and immune system look around and notice that the cells of the body in which they now reside don’t look familiar and they go on the attack.  In that regard, it is an autoimmune disorder, treatable like others, with steroids and immunosuppressants.  But the transplant doctors didn’t see it that way.  They wanted to treat each symptom as if it were a separate problem.  For the difficulty in swallowing, they sent us to the gastroenterologist.  He wanted to do a CT scan while he swallowed. 

I asked the guy, “Did you check to see how much radiation he’s been subject to so far?”   Of course, he hadn’t.  Everyone wants a test.  Everyone wants more information.   But gathering information is not free.  I said no.  No more radiation.  Nobody at the hospital had any inkling of how much radiation to which my son had been subjected. 

Radiation is an insult to the body.  It kills rapidly-growing cells by damaging their DNA so that they die in replication.  It damages the DNA of slower-growing cells too, but slower-growing cells have generally more time and ability to repair their damaged DNA before mitosis.  But not all DNA damage can be repaired.  It’s why radiation, which is so effective at killing cancer cells, is itself the cause of cancers after the passage of time. 

Last November, the inept transplant team finally agreed that he was suffering from GVHD when the tips of his fingers turned blue and numb and started dying.  It was Reynaud’s syndrome, another autoimmune disorder.  So what did they do?  They sent us to the hospital rheumatologist.  This seemed curious to me.  These transplant guys have no expertise in anything except bone marrow transplants, and GVHD is a very common transplant complication, yet they send us to see a rheumatologist?  Guess what the rheumatologist wanted us to do?  A high-intensity CT scan to make sure the GVHD hadn’t damaged his lungs.  Again, I asked, “Any idea of how much radiation this kid has received?”  Again the dumbfounded look.  Again, I said no.

Is there anything to learn from this? Indeed.

First, that there is no one–not a single soul– inside a hospital bureaucracy that has the whole patient’s interests in mind.  No one.  A hospital is a faceless bureaucracy, existing like all others, so that it might continue to exist.  Hospital doctors, particularly bone marrow transplant doctors at the hospital where my son got both of his transplants, have no particular concern for the whole patient.  Hospital doctors look at a patient as bits and pieces of a body, never accounting for the whole, and their interests are so narrowly-focused and selfish until it’s as if the doctors themselves constitute a latent autoimmune disease for their patients.  If a human body is a collection of several trillion cells acting cooperatively to ensure its genetic code gets to the next generation, a hospital of specialists is a collection of interlopers trying to ensure cellular cooperation within the patient’s body fails. 

Second, for parents, this article and my son’s experiences reveal an especially poignant truth:  Nobody cares about your child’s health and welfare more than you.  When your child is sick and needs medical care, it is your duty to your child that you become familiar with the medicine and skeptical of what you hear from its practitioners.  Question everything.  Hospital doctors are shift workers.  They just want to get home and grab a beer and the TV remote.  They aren’t brilliant and erratic geniuses like you see on Fox TV’s “House”.   They probably went into medicine because they were geeky science nerds that weren’t quite smart enough for the Ph.D track, but wanted a chance to make enough money until the girls might find them attractive.  You, however, are in it for the long haul.  Parenting is not shift work.  It never ends.  It is your priorities, not those of the hospital bureaucrats–doctors included–that matter, because you alone have as your number one priority the health and welfare of your child.

Third, that you must not let medical professionals intimidate you into unnecessary procedures.   You must always keep the big picture in view when deciding upon an invasive test.  The questions to ask when a doctor wants to perform a test that involves some insult to the body are: 1)  Will this reveal actionable information, i.e., will it give you information that will enlighten the path of treatment?  If the answer is yes, then 2)  Is there another non-insulting method of testing by which the same information can be gathered?